DISABILITY CARER V's AUSTRALIAN/TASMANIAN HEALTH SYSTEM
DISABILITY CARER V's AUSTRALIAN/TASMANIAN HEALTH SYSTEM
The issue
Hello my name is Soraya. I am a carer for a person with a physical disability. I know your time is valuable, but I implore you to please take the time to read this fully- with over 3.6 million Australians living with chronic pain, the concerns I raise may impact someone you love too.
It is extremely difficult to condense and convey to you, the distress and harm 12 years of neglect, restrictions, refusal of care and lies from the Tasmanian Health Service, has had on my husband and myself. I can’t tell you of every derogatory comment, incident and refusal, you wouldn’t have the time to read it all, however I put a complaint into the Office of the Health Complaints Commissioner (OHCC) on May 16, 2021 in a statutory declaration. It took the OHCC 2 years to rewrite the complaint and submit it to Tasmanian Health System (THS) Sept 5, 2023. The THS still have not forwarded me a response a year and a half later (there is no time frame to respond), regardless of how time sensitive the complaint is for the patient’s medical needs, their constant suffering and ongoing trauma.
REFUSAL OF CARE FOR DISABILITY
I have been a carer for my husband for thirty years, as a result of degenerative spinal disease (or Facet Joint disease) and failed spinal fusions with two BAK cages in 1996/7 known as ‘Failed Back Surgery Syndrome’. One cage migrated and adhered to his aorta which tore on removal, requiring an aortic graft with large blood transfusion, resulting in severe nerve damage from the life-saving surgery. He lives with severe chronic pain as part of his disability, which has been repeatedly disrespected, ignored, dismissed and ridiculed since moving to Tasmania by the Tasmanian Health Service (THS), namely the Pharmaceutical Services Board and the Persistent Pain Service (PPS) Director Dr Hilton Francis in Hobart and the North West Regional Hospital (NWRH). The PPS had on their website until I brought it to their attention, “we do not consider pain to be a ‘disability’”. It has recently been removed.
Recommendations of the THS, PSB, PPS, NWRH and Politicians, have wasted precious time for the last 12 years, in an effort to stop the stigmatisation, discrimination, defamation, abuse and refusal of care my husband has been subjected to, ONLY because he requires pain management as part of his disability management plan. His multiple allergies and intolerance's to medications have also been continually questioned by the PSB. His disability and mental health have declined rapidly over the last 12 years, due to their repeated refusal to allow appropriate management for any ongoing pain management, physical therapy and rehabilitation.
From our first attendance at the NWRH ED, we have been treated with suspicion due to simply knowing his own medical condition thoroughly, and which medications my husband can and can’t tolerate, due to allergies. Initially he was refused treatment and any medication for severe sciatica attack (with remote triage from Hobart PPS Director Dr Francis- we were not informed of this). Then it changed to limited medication for sciatica after a 90-minute wait (multiple times).
Even a second kidney stone pain presentation was documented as “drug seeking and long-term prescription drug abuser” by the NWRH ED locum doctor (with no evidence or explanation when asked). Our GP stating to NWRH “The comments made …. are disingenuous and inflammatory …. What really concerns me is that, if you and I turned up in pain, we would be treated differently to this man…. The last ED visit was in fact in relation to renal colic (kidney stone). I believe he had no pain relief to take home and no ondansetron to reduce the nausea. He passed the stone at home”. He has never been refused treatment in any other hospital. Also banned by the NWRH are any hospital scripts for ANY presentation, making it substantially more difficult for me as his carer to access medication.
US - CDC advises misapplication of opioid prescribing guidelines 2019
Since 2016 he has had nine kidney stones, with three recent surgeries for removal of a 7mm stone and stent, and still had pain management refused at times. I sent a complaint (notification) to AHPRA for the derogatory comments and a Freedom of Information request to AHPRA in 2019. The documents I received showed he was now only allowed 4 presentations per year for NWRH ED attendance related to back pain (disability). I questioned this and received a letter from Eric Daniels, Chief Executive Hospitals North/North west stating we were “not welcome” to use the NWRH ED for related back pain (disability). I questioned his ED ban and his clarification was “the restrictions you have raised specifically related to exacerbation's of (my husband’s) chronic pain” which is part of his disability!
NWRH acting Director of Medical Services, Dr Helen McArdle also stated in her response to AHPRA it “was their behaviour” as to why the presentation was questioned as drug seeking (an out of hours presentation, multiple allergies etc), and refused to amend the medical record i.e. Patient/carer blaming. Dr McArdle has represented Tasmania on both the Australian Medical Association (AMA) Federal Council and the AMA Pty Board, is a Fellow of the Australian Institute of Company Directors and is now on the Board of Directors for Palliative Care Tasmania. Would anyone reading this, expect a letter from the Health Department, banning you from treatment from the nearest hospital ED, in a rural area with nowhere else to go?
Each time I have requested the reasoning and evidence behind their flawed decision-making processes, lies and disinformation stated by the THS, NWRH, PSB and PPS on medical reports and documentation to AHPRA and NDIS, I am refused any explanation other than, it is “state protocol” and I am welcome to make a complaint to the Health Commission. As a carer I have been named as ‘coercive’, ‘drug seeking’ and even a ‘financial risk’ for advocating for medical management, labels I find highly insulting, while they ignore severe spinal degeneration, a spinal facet joint fracture, a critical loss of functionality and weight, severe nerve damage, associated severe depression and severe anxiety and CPTSD.
Access to medical care is contingent on attendance at the PPS in Hobart, but his right of refusal to attend the PPS has been taken away - an email from the PSB to NWRH ED doctor stated “…pharmacist involved, Sam Halliday, who advised me things are at an impasse unless (my husband) reconsiders and agrees to engage with the multi-disciplinary persistent pain people in Hobart”, despite specialists stating it is of no further benefit to my husband, due to his unstable condition and increasing neurological pain preventing attendance by the PPS own criteria.
Also “it is their feeling he be persistently restricted… (unless it’s non-back related)” yet the official line I get in a letter from former THS CEO Dr David Alcorn is “I must stress that there is not and never has been a restriction on what medication he receives when he attends the hospital” i.e. Lies, controlling, manipulative or coercive behaviour by the PSB and THS. Regardless of multiple specialists’ recommendations for medication as part of my husband’s management plan unless the PSB authorise the application the doctor writes, you cannot access the medication. And even as late as last year, he was refused medication in NWRH ED.
SYSTEMIC ISSUES WITH LEGISLATION AND PROTOCOL IGNORED
It is crystal clear to me Politicians both state and federal have undeniably ignored Persistent Pain Service “concerns of a systemic nature, in particular that patients with complex pain conditions have difficulty accessing treatment for persistent pain…. And which appears to have a policy (formal or otherwise of not prescribing pain management)” as noted by AHPRA, who forwarded their concerns in 2018 to the Tasmanian Ombudsman, with no response to my follow up emails.
Politicians contacted (State, Federal and opposition) include;
Every Prime Minister, including PM Anthony Albanese and opposition leader, Peter Dutton for the last twelve years
Every Federal and opposition Health Minister including Mark Butler and opposition Senator Anne Ruston
Labor Senator Ann Urquhart (multiple contacts over 12 years, ghosted us)
Liberal Senator Bridget Archer
Independents including Senator David Pocock,
Senator Jacqui Lambie (multiple contacts over the years, openly states she protects Tasmanian's)
Every Premier including Premier Rockliff and former opposition leaders including Rebecca White since 2013.
Every State Health Minister including Michael Ferguson, Guy Barnett, Jacquie Petrusma (a former registered nurse), and opposition Anita Dow (also a former registered nurse).
Also, Pain Australia (Govt funded) and Chronic pain Australia, both refused to advocate, and two Pain Australia CEO’s have now ghosted me.
Painaustralia Impact of opioid regulatory reforms on people living with chronic pain
Despite frequent desperate requests over 12 years, Politicians refuse to find the time to speak to me regarding these serious systemic issues and the suicide statistics in this state. Between 2012-2018, there were 505 suicide deaths; almost half who died had acute, chronic or cancer pain (yet only 2% were terminal). Most politicians are completely disingenuous, apathetic and dismissive of my increasingly desperate concerns for my husband and others in similar positions here in Tasmania (and around Australia), despite the added cost it is inflicting on the taxpayer and grievous difficulties doctors face in advocating and caring for their patients –
“As a rural GP I find there are severe restrictions in being able to provide adequate care”, and “I am sorry about this as it obviously affects (my husband’s) mental health but it is beyond my control as you know.”
From a specialist “The DHHS pharmaceutical authority folk often make unreasonable demands that these patients have that assessment and management by a PPS which means Hobart… However, with lack of support from the organisation here...I now do my best not to see these patients"-referring to the PSB.
The Greens stated it this way: we realistically do not have the authority or power to change decisions made by the Tasmanian Government, unless the Tasmanian Government are willing to engage and review their state laws and policies. This is inherently a systemic issue, meaning there is little room for intervention without the Government leading it… there is little that can be done outside of the set protocols in Tasmania to get the result that patients are requesting.
A very respected Pain Specialist and examiner with ANZCA FPM also stated to me, in her opinion, they are victim blaming and using pejorative terms … which manifests in more pain to physical health with nervous system changes and a downward health spiral (as already experienced by my husband) leading to suicidality.
Also, clinical needs still take priority. There is no patient centred care and that patient care is on the terms of the health system with no consultation process or even communication with the patient. i.e. a paternalistic approach where the system is failing the patient, which comes back to failure to provide medical practitioners with skills to even provide assessment which my husband has not had in 12 years, due to their failure to provide comprehensive care closer to patients which is not addressed by any govt.
They have a narrow interpretation/manipulation of the US Centre for Disease Control (CDC) guidelines/advice without regard to intent. Essentially it is passive obstruction to accessing adequate care. The regulatory control has created new iatrogenic harms for patients.
The Chair of the Medical Board also agreed with her it was patient abandonment.
CRIES FOR HELP IGNORED
Despite advocacy from every Pain Specialist, Physiotherapist, Occupational Therapist, Psychiatrist, Psychologist, and GP’s who have consulted with my husband, for adequate management of his disability, de-conditioning and rehabilitation, it has been withheld or had severe restrictions on it, leading to irreversible damage to my husband’s physical and mental health.
“Not Allowed to Be Compassionate” Chronic Pain, the Overdose Crisis, and Unintended Harms in the US
In Oct 2022, while waiting for emergency kidney stone surgery, NWRH doctors decided to change him to a new medication for no reason, which he then developed a serious allergic reaction to. He required ambulance attendance twice once he was discharged home, suffering with breathing difficulties and hives in mouth/neck/back. His allergic reaction was later questioned by the PSB. This left my husband without pain medication, post-surgery (with a perforated ureter) for four days, and despite me ringing both NWRH and Launceston General hospitals, neither would contact our GP to request an urgent alternate script. Tasmania’s strict legislation and paternalistic protocols need reviewing as they are causing ongoing harm to patients.
This is not right, patients should not be suffering in silence, or told they “Can exist” by an unnamed ‘Expert Advisory Panel’ for the PSB. The PSB are making decisions which are impacting EVERY facet of our life and that of our family, yet don’t believe his disability. In 2015 Expert Advisory Panel notes from the PSB, their concern is for ‘nonspecific diagnosis of lower back pain’? NOT ONCE in 12 years, has my husband had a full physical examination, his medication needs assessed or asked us or our GP how it’s impacted his quality of life, mental health and most importantly his rapidly declining functionality. They haven’t requested his scans and prior medical reports or contacted previous doctors and specialists, and even a letter of advocacy from a GP to the Premier/Health Minister was dismissed.
Yet his disability was comprehensively managed and monitored with NO issues before relocating.
My husband can no longer drive, or eat regular meals for the nausea losing over 35kg, has chronic exhaustion from 12 years of broken sleep 0-3 hours per night, cannot stand for any time, bond with his family, and can only leave our property except by ambulance or medical in-patient transport. He has NO QUALITY OF LIFE. There is no joy, he has forgotten how it feels to be happy. He has more pain from scoliosis caused by the severe de-conditioning which has occurred since he was forced off his medication. Every day he is tormented with pain other people get care for, as documented by his former GP. He sees no future. He has lost all trust in health services.
Why is the Government both State and Federal enabling doctors to abandon patients in pain and distress both physically and mentally? It is unconscionable, yet it is happening every day. The Government knows, due to this being a sensitive and somewhat shameful subject (who wants to admit using pain management and being stigmatised as weak, useless or a ‘chemical coper’ as Dr Francis asserts), patients will not advocate vocally about their grievances and the wilful lack of medical care and management from the THS. I wonder, has any government minister ever been refused medical care?
I now understand their unwillingness to listen to me, but they will listen to us collectively. We need to make sure those in our communities who cannot speak up and those too scared to speak up, have a voice. Please, help me in making the politicians and Australian and Tasmanian Health Services accountable for the harm they are doing. We need to change the rhetoric, not make patients with pain the new “lepers” of our society. Pain patients are being fundamentally disrespected by those in the highest positions stating they are only ‘drug seeking’. Please help me make a difference for those who cannot speak up. It is not their ‘fault’ they live with pain, nor should they be ‘punished’ by a paternalistic and punitive Government and Health Department, who seem to forget their ‘duty of care’ and the concept ‘do no harm’ to the patient.
Enough stigmatisation, bias, suspicion, lies, innuendo, assumptions, hearsay, and moral judgement or, is this the path Pain management is now legislated to take in Australia?
PLEASE SIGN to show your support for pain sufferers and share with others to create change for my husband and those living with unbearable pain now and in the future.
I am of course, happy to sign a statutory Declaration containing all this information and answer any questions relevant to this (very abbreviated), 12-year factual account – would they?
From a carer, I sincerely thank you for reading this in full.
1,544
The issue
Hello my name is Soraya. I am a carer for a person with a physical disability. I know your time is valuable, but I implore you to please take the time to read this fully- with over 3.6 million Australians living with chronic pain, the concerns I raise may impact someone you love too.
It is extremely difficult to condense and convey to you, the distress and harm 12 years of neglect, restrictions, refusal of care and lies from the Tasmanian Health Service, has had on my husband and myself. I can’t tell you of every derogatory comment, incident and refusal, you wouldn’t have the time to read it all, however I put a complaint into the Office of the Health Complaints Commissioner (OHCC) on May 16, 2021 in a statutory declaration. It took the OHCC 2 years to rewrite the complaint and submit it to Tasmanian Health System (THS) Sept 5, 2023. The THS still have not forwarded me a response a year and a half later (there is no time frame to respond), regardless of how time sensitive the complaint is for the patient’s medical needs, their constant suffering and ongoing trauma.
REFUSAL OF CARE FOR DISABILITY
I have been a carer for my husband for thirty years, as a result of degenerative spinal disease (or Facet Joint disease) and failed spinal fusions with two BAK cages in 1996/7 known as ‘Failed Back Surgery Syndrome’. One cage migrated and adhered to his aorta which tore on removal, requiring an aortic graft with large blood transfusion, resulting in severe nerve damage from the life-saving surgery. He lives with severe chronic pain as part of his disability, which has been repeatedly disrespected, ignored, dismissed and ridiculed since moving to Tasmania by the Tasmanian Health Service (THS), namely the Pharmaceutical Services Board and the Persistent Pain Service (PPS) Director Dr Hilton Francis in Hobart and the North West Regional Hospital (NWRH). The PPS had on their website until I brought it to their attention, “we do not consider pain to be a ‘disability’”. It has recently been removed.
Recommendations of the THS, PSB, PPS, NWRH and Politicians, have wasted precious time for the last 12 years, in an effort to stop the stigmatisation, discrimination, defamation, abuse and refusal of care my husband has been subjected to, ONLY because he requires pain management as part of his disability management plan. His multiple allergies and intolerance's to medications have also been continually questioned by the PSB. His disability and mental health have declined rapidly over the last 12 years, due to their repeated refusal to allow appropriate management for any ongoing pain management, physical therapy and rehabilitation.
From our first attendance at the NWRH ED, we have been treated with suspicion due to simply knowing his own medical condition thoroughly, and which medications my husband can and can’t tolerate, due to allergies. Initially he was refused treatment and any medication for severe sciatica attack (with remote triage from Hobart PPS Director Dr Francis- we were not informed of this). Then it changed to limited medication for sciatica after a 90-minute wait (multiple times).
Even a second kidney stone pain presentation was documented as “drug seeking and long-term prescription drug abuser” by the NWRH ED locum doctor (with no evidence or explanation when asked). Our GP stating to NWRH “The comments made …. are disingenuous and inflammatory …. What really concerns me is that, if you and I turned up in pain, we would be treated differently to this man…. The last ED visit was in fact in relation to renal colic (kidney stone). I believe he had no pain relief to take home and no ondansetron to reduce the nausea. He passed the stone at home”. He has never been refused treatment in any other hospital. Also banned by the NWRH are any hospital scripts for ANY presentation, making it substantially more difficult for me as his carer to access medication.
US - CDC advises misapplication of opioid prescribing guidelines 2019
Since 2016 he has had nine kidney stones, with three recent surgeries for removal of a 7mm stone and stent, and still had pain management refused at times. I sent a complaint (notification) to AHPRA for the derogatory comments and a Freedom of Information request to AHPRA in 2019. The documents I received showed he was now only allowed 4 presentations per year for NWRH ED attendance related to back pain (disability). I questioned this and received a letter from Eric Daniels, Chief Executive Hospitals North/North west stating we were “not welcome” to use the NWRH ED for related back pain (disability). I questioned his ED ban and his clarification was “the restrictions you have raised specifically related to exacerbation's of (my husband’s) chronic pain” which is part of his disability!
NWRH acting Director of Medical Services, Dr Helen McArdle also stated in her response to AHPRA it “was their behaviour” as to why the presentation was questioned as drug seeking (an out of hours presentation, multiple allergies etc), and refused to amend the medical record i.e. Patient/carer blaming. Dr McArdle has represented Tasmania on both the Australian Medical Association (AMA) Federal Council and the AMA Pty Board, is a Fellow of the Australian Institute of Company Directors and is now on the Board of Directors for Palliative Care Tasmania. Would anyone reading this, expect a letter from the Health Department, banning you from treatment from the nearest hospital ED, in a rural area with nowhere else to go?
Each time I have requested the reasoning and evidence behind their flawed decision-making processes, lies and disinformation stated by the THS, NWRH, PSB and PPS on medical reports and documentation to AHPRA and NDIS, I am refused any explanation other than, it is “state protocol” and I am welcome to make a complaint to the Health Commission. As a carer I have been named as ‘coercive’, ‘drug seeking’ and even a ‘financial risk’ for advocating for medical management, labels I find highly insulting, while they ignore severe spinal degeneration, a spinal facet joint fracture, a critical loss of functionality and weight, severe nerve damage, associated severe depression and severe anxiety and CPTSD.
Access to medical care is contingent on attendance at the PPS in Hobart, but his right of refusal to attend the PPS has been taken away - an email from the PSB to NWRH ED doctor stated “…pharmacist involved, Sam Halliday, who advised me things are at an impasse unless (my husband) reconsiders and agrees to engage with the multi-disciplinary persistent pain people in Hobart”, despite specialists stating it is of no further benefit to my husband, due to his unstable condition and increasing neurological pain preventing attendance by the PPS own criteria.
Also “it is their feeling he be persistently restricted… (unless it’s non-back related)” yet the official line I get in a letter from former THS CEO Dr David Alcorn is “I must stress that there is not and never has been a restriction on what medication he receives when he attends the hospital” i.e. Lies, controlling, manipulative or coercive behaviour by the PSB and THS. Regardless of multiple specialists’ recommendations for medication as part of my husband’s management plan unless the PSB authorise the application the doctor writes, you cannot access the medication. And even as late as last year, he was refused medication in NWRH ED.
SYSTEMIC ISSUES WITH LEGISLATION AND PROTOCOL IGNORED
It is crystal clear to me Politicians both state and federal have undeniably ignored Persistent Pain Service “concerns of a systemic nature, in particular that patients with complex pain conditions have difficulty accessing treatment for persistent pain…. And which appears to have a policy (formal or otherwise of not prescribing pain management)” as noted by AHPRA, who forwarded their concerns in 2018 to the Tasmanian Ombudsman, with no response to my follow up emails.
Politicians contacted (State, Federal and opposition) include;
Every Prime Minister, including PM Anthony Albanese and opposition leader, Peter Dutton for the last twelve years
Every Federal and opposition Health Minister including Mark Butler and opposition Senator Anne Ruston
Labor Senator Ann Urquhart (multiple contacts over 12 years, ghosted us)
Liberal Senator Bridget Archer
Independents including Senator David Pocock,
Senator Jacqui Lambie (multiple contacts over the years, openly states she protects Tasmanian's)
Every Premier including Premier Rockliff and former opposition leaders including Rebecca White since 2013.
Every State Health Minister including Michael Ferguson, Guy Barnett, Jacquie Petrusma (a former registered nurse), and opposition Anita Dow (also a former registered nurse).
Also, Pain Australia (Govt funded) and Chronic pain Australia, both refused to advocate, and two Pain Australia CEO’s have now ghosted me.
Painaustralia Impact of opioid regulatory reforms on people living with chronic pain
Despite frequent desperate requests over 12 years, Politicians refuse to find the time to speak to me regarding these serious systemic issues and the suicide statistics in this state. Between 2012-2018, there were 505 suicide deaths; almost half who died had acute, chronic or cancer pain (yet only 2% were terminal). Most politicians are completely disingenuous, apathetic and dismissive of my increasingly desperate concerns for my husband and others in similar positions here in Tasmania (and around Australia), despite the added cost it is inflicting on the taxpayer and grievous difficulties doctors face in advocating and caring for their patients –
“As a rural GP I find there are severe restrictions in being able to provide adequate care”, and “I am sorry about this as it obviously affects (my husband’s) mental health but it is beyond my control as you know.”
From a specialist “The DHHS pharmaceutical authority folk often make unreasonable demands that these patients have that assessment and management by a PPS which means Hobart… However, with lack of support from the organisation here...I now do my best not to see these patients"-referring to the PSB.
The Greens stated it this way: we realistically do not have the authority or power to change decisions made by the Tasmanian Government, unless the Tasmanian Government are willing to engage and review their state laws and policies. This is inherently a systemic issue, meaning there is little room for intervention without the Government leading it… there is little that can be done outside of the set protocols in Tasmania to get the result that patients are requesting.
A very respected Pain Specialist and examiner with ANZCA FPM also stated to me, in her opinion, they are victim blaming and using pejorative terms … which manifests in more pain to physical health with nervous system changes and a downward health spiral (as already experienced by my husband) leading to suicidality.
Also, clinical needs still take priority. There is no patient centred care and that patient care is on the terms of the health system with no consultation process or even communication with the patient. i.e. a paternalistic approach where the system is failing the patient, which comes back to failure to provide medical practitioners with skills to even provide assessment which my husband has not had in 12 years, due to their failure to provide comprehensive care closer to patients which is not addressed by any govt.
They have a narrow interpretation/manipulation of the US Centre for Disease Control (CDC) guidelines/advice without regard to intent. Essentially it is passive obstruction to accessing adequate care. The regulatory control has created new iatrogenic harms for patients.
The Chair of the Medical Board also agreed with her it was patient abandonment.
CRIES FOR HELP IGNORED
Despite advocacy from every Pain Specialist, Physiotherapist, Occupational Therapist, Psychiatrist, Psychologist, and GP’s who have consulted with my husband, for adequate management of his disability, de-conditioning and rehabilitation, it has been withheld or had severe restrictions on it, leading to irreversible damage to my husband’s physical and mental health.
“Not Allowed to Be Compassionate” Chronic Pain, the Overdose Crisis, and Unintended Harms in the US
In Oct 2022, while waiting for emergency kidney stone surgery, NWRH doctors decided to change him to a new medication for no reason, which he then developed a serious allergic reaction to. He required ambulance attendance twice once he was discharged home, suffering with breathing difficulties and hives in mouth/neck/back. His allergic reaction was later questioned by the PSB. This left my husband without pain medication, post-surgery (with a perforated ureter) for four days, and despite me ringing both NWRH and Launceston General hospitals, neither would contact our GP to request an urgent alternate script. Tasmania’s strict legislation and paternalistic protocols need reviewing as they are causing ongoing harm to patients.
This is not right, patients should not be suffering in silence, or told they “Can exist” by an unnamed ‘Expert Advisory Panel’ for the PSB. The PSB are making decisions which are impacting EVERY facet of our life and that of our family, yet don’t believe his disability. In 2015 Expert Advisory Panel notes from the PSB, their concern is for ‘nonspecific diagnosis of lower back pain’? NOT ONCE in 12 years, has my husband had a full physical examination, his medication needs assessed or asked us or our GP how it’s impacted his quality of life, mental health and most importantly his rapidly declining functionality. They haven’t requested his scans and prior medical reports or contacted previous doctors and specialists, and even a letter of advocacy from a GP to the Premier/Health Minister was dismissed.
Yet his disability was comprehensively managed and monitored with NO issues before relocating.
My husband can no longer drive, or eat regular meals for the nausea losing over 35kg, has chronic exhaustion from 12 years of broken sleep 0-3 hours per night, cannot stand for any time, bond with his family, and can only leave our property except by ambulance or medical in-patient transport. He has NO QUALITY OF LIFE. There is no joy, he has forgotten how it feels to be happy. He has more pain from scoliosis caused by the severe de-conditioning which has occurred since he was forced off his medication. Every day he is tormented with pain other people get care for, as documented by his former GP. He sees no future. He has lost all trust in health services.
Why is the Government both State and Federal enabling doctors to abandon patients in pain and distress both physically and mentally? It is unconscionable, yet it is happening every day. The Government knows, due to this being a sensitive and somewhat shameful subject (who wants to admit using pain management and being stigmatised as weak, useless or a ‘chemical coper’ as Dr Francis asserts), patients will not advocate vocally about their grievances and the wilful lack of medical care and management from the THS. I wonder, has any government minister ever been refused medical care?
I now understand their unwillingness to listen to me, but they will listen to us collectively. We need to make sure those in our communities who cannot speak up and those too scared to speak up, have a voice. Please, help me in making the politicians and Australian and Tasmanian Health Services accountable for the harm they are doing. We need to change the rhetoric, not make patients with pain the new “lepers” of our society. Pain patients are being fundamentally disrespected by those in the highest positions stating they are only ‘drug seeking’. Please help me make a difference for those who cannot speak up. It is not their ‘fault’ they live with pain, nor should they be ‘punished’ by a paternalistic and punitive Government and Health Department, who seem to forget their ‘duty of care’ and the concept ‘do no harm’ to the patient.
Enough stigmatisation, bias, suspicion, lies, innuendo, assumptions, hearsay, and moral judgement or, is this the path Pain management is now legislated to take in Australia?
PLEASE SIGN to show your support for pain sufferers and share with others to create change for my husband and those living with unbearable pain now and in the future.
I am of course, happy to sign a statutory Declaration containing all this information and answer any questions relevant to this (very abbreviated), 12-year factual account – would they?
From a carer, I sincerely thank you for reading this in full.
1,544
The Decision Makers
Supporter voices
Petition created on 24 February 2025